HI I have joined this forum as i have struggled with the fact that my son has hd and through his father. my other son does not want to know so he will not test. Sometimes i find it overwhelming and it is hard to talk to people who dont know what it is like. any advice /help will be much appreciated

Hello and welcome.my 17 year old daughter has JHD so I fully understand how you feel as a mum watching your son suffer with this terrible disease. However how old he is he will always be your child!You have come to the right place for advice and support.xxx

Hi thanks for that its good to talk to someone who really knows how your feeling. Its when I see him and look at the despair in his eyes. from being a high flying successfull person to what he is now kills him. nothing you can say to make it better. cheers. pat

I agree with ya Pat that talking to someone who doesn't live with HD doesn't quite get your meaning all the time. And sometimes we feel things that almost sound mean out of context so you don't say them. But we do get stuff here.. so welcome. Have you been reading things here for a while or just found us and just diving right in?

Welcome.

Hi i have been using hd lighthouse sight for some time as it is the only one that is remotely positive. but i am usually a very private person have told a few friends but they dont understand and make sympatheic gestures but i need to talk about it to people who do understand. there are days when i think desperate thoughts especially when i see my son and how much mental pain he is suffering. and i feel helpless cause i cant take it away.

Been there done that.As a parent you are there to 'make it better' and protect your children.This disease even takes that right away from a parent.It's not nature's order to lose your child which makes it very difficult to accept.Do you know:

A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is! - Neugeboren 1976

Welcome.. You have came to the right place. Here everyone understands you and will go out of their way to help you.. I love it here !!!


Liz

Hey Pat, welcome to the forum. I'm so sorry what you are going through with your son.

welcome!

I have always found so much information from this forum and also the hdlighthouse articles . Even reading the back articles can be comforting . I too have 2 grown sons who could be at risk ; I my self have not tested . My Mom is 82 with HD . all my best. db

I hope you can find useful and comforting information here. It has greatly helped me. I have a pHD hubby and my young son is at risk.